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Archive for May, 2009

We were fortunate to see Doc on Friday. We actually had a follow-up to Simon’s ear infection, but took the opportunity to go over some progresses we’ve had with Simon and his feeding difficulties. Doc was quite impressed and even witnessed Simon eating while there. After assessing his weight, the number of days, Simon’s activity level and calorie consumption; we’ve been cleared to not go to Denver for a week – at least for now.

Simon was down to 16 pounds 13 ounces and has gained an average of 1/2 an ounce for 23 days. The gain is enough to keep him chugging along at home. We are continuing on with therapy and will utilize our SLP and OT greatly when time comes to reintroduce solids. Until that time, we are going to cruise with bottle feeding.

I also want to state that we’ve had an amazing success with an added item in Simon’s life. Through a series of happenings, we have acquired a Tucker Sling and bless that wedge each and every day. It’s made an enormous difference in Simon’s sleep habits and comfort. To Terry – THANK YOU!

Until later this week,

God Bless!

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Wyoming springs and summer bring the opportunity to change up a few things in our routines and begin spending more time outside.  We’ve still managed to keep Simon in quite a bit, but have enjoyed a few more walks and quiet evenings enjoying the sunsets.

This season is bringing a few additional changes to our lives.  Jaden is preparing to go into Kindergarten, Rob will be attending the Wind Energy Program with the goal of attaining his associates degree, I’m going back to work and Simon will be tagging along for the fun.

Our schedules are changing, growing and accommodating all the excitement of fall, winter and the new year.

Simon is also very active.  He’s mastered rolling and is now inching himself backwards on the floor.  Before long that inching will turn to crawling and I’m not ready!

Simon’s taken well to his medicine regiment and sees the doctor again next Friday.  Therapy is going well and will continue throughout summer, guaranteed.  We are thrilled at the progress Simon has made.  He’s turned into a very curious little boy.

Without further ado, a video of our little Preemie miracle.

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As with Simon’s feeding challenges, we’ve settled into a routine of thickening his feedings.  That began prior to discharge home and has changed, but continued since.

To recap:

Simon spent 14 weeks with a feeding tube of some sort.  He’s had Nasojejunal, Nasogastric and Oral-gastric feeding tubes.  When he began nippling, all went well to start and quickly became a challenge as his feeding amount increased.  His reflux was severe enough that he would experience bradicardic episodes while being gavage fed through his NG tube (at the time.)  A barium swallow study was ordered and while they didn’t wait long enough to watch the force or amount of food coming back up, they were able to watch as the liquid was entering the trachea and into his nose.  Thickening was necessary to prevent aspiration.  We began with Simply-Thick and have moved to rice cereal as Simon had intestinal challenges with the Simply-Thick.

Today’s trial:

Getting the Bionix Controlled-Flow feeder together was quite simple following the instructions.  We began with our standard thickness of 3 tsp cereal to 1 oz juice.  This was a bit too thick for Simon even on the highest setting (5), so I opted to make a formula bottle slightly thinner with 2 tsp of cereal to 1 oz.  I began at setting 1 for the slowest flow, slowly increasing until it was obvious that Simon was getting fluids fairly easily.  He did okay for approximately 10 cc’s, but began coughing.  We opted to stop there for today, allowing him a rest and brainstorming opportunities for me.

Ideas:

We will try a few different consistencies of both liquid and milk products to see if we can find one that might work through the feeder.

Product:

At this point, I can safely say that this bottle would have been highly beneficial while in the NICU with Simon.  We would have had more control over the quantity he was taking into his mouth in one suck.

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Yesterday was a good day for Simon in that Megan came out to visit and brainstorm. While he didn’t eat, we did discuss all the ups and downs, activities tried and worked on finding additional items and activities to try.

Things we’ve tried:

  • Feeding in his chair
  • Feeding in his bed
  • Feeding in our laps
  • Feeding in our arms
  • Multiple bottles and nipple flows
  • Spoon feeding
  • As soon as he wakes
  • As soon as he shows signs of tiredness
  • Various thickness to his formula
  • Juices
  • Water – with and without sweetening
  • Less food, more often

What we are going to try:

The ultimate goal is to get Simon eating more and find something that will work well for his current needs.  He had a great deal of fun playing with the solid food holder this morning and did get it into his mouth.  He didn’t appear impressed with the texture of the mesh, but we’ll continue trying.

It’s quite stressful when Simon won’t eat.  While we don’t want his entire life to be about eating, we don’t want him malnourished either.  Finding a balance is quite the conundrum.  We reach out to all of you who’ve followed Simon, stumbled upon this blog and have similar experiences for suggestions.  If you’ve tried a product that worked, please pass it along.

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It’s been a long nine months. We’ve had major ups and major downs. Somewhere along the way we’ve been more than blessed to be able to share this with you all.

Thank you for the support, encouragement, love and prayers!

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